In the so-called “post-truth era,” science seems like one of the last bastions of objective knowledge, but what if science itself were to succumb to fake news? Over the past year, German journalist Svea Eckert and a small team of journalists went undercover to investigate a massive underground network of fake science journals and conferences.

In the course of the investigation, which was chronicled in the documentary “Inside the Fake Science Factory,” the team analyzed over 175,000 articles published in predatory journals and found hundreds of papers from academics at leading institutions, as well as substantial amounts of research pushed by pharmaceutical corporations, tobacco companies, and others. Last year, one fake science institution run by a Turkish family was estimated to have earned over $4 million in revenue through conferences and journals.

The story begins with Chris Sumner, a co-founder of the nonprofit Online Privacy Foundation, who unwittingly attended a conference organized by the World Academy of Science, Engineering and Technology (WASET) last October. At first glance, WASET seems to be a legitimate organization. Its website lists thousands of conferences around the world in pretty much every conceivable academic discipline, with dates scheduled all the way out to 2031. It has also published over ten thousand papers in an “open science, peer reviewed, interdisciplinary, monthly and fully referred [sic] international research journal” that covers everything from aerospace engineering to nutrition. To any scientist familiar with the peer review process, however, WASET’s site has a number of red flags, such as spelling errors and the sheer scope of the disciplines it publishes.

Sumner attended the WASET conference to get feedback on his research, but after attending it became obvious that the conference was a scam. After digging into WASET’s background, Sumner partnered with Eckert and her colleague Till Krause, who adopted fictitious academic personas and began submitting papers to WASET’s journal. The first paper to get accepted was titled “Highly-Available, Collaborative, Trainable Communication-a policy neutral approach,” which claims to be about a type of cryptoanalysis based on “unified scalable theory.” The paper was accepted by the WASET journal with minimal notes and praise for the authors’ contribution to this field of research.

There was just one problem: The paper was pure nonsense that had been written by a joke software program designed by some MIT students to algorithmically generate computer science papers. It was, in a word, total bullshit.

As detailed in a talk this year at Def Con, last year Eckert and Krause attended a conference organized by WASET in London to present their bullshit paper. The two journalists went in disguise as the fictitious academics Dr. Cindy Poppins and Dr. Edgar Munchhausen. When they arrived, they discovered the two-hour “conference” was actually just a half-dozen people in a room with a projector, all of whom had paid hundreds of dollars for the privilege. When Eckert and Krause approached Bora Ardil, the conference organizer, to learn more about WASET, they said he was cagey and declined to give straight answers about his affiliation with the conference. According to Eckert, he claimed he was just a doctoral student working with WASET.

After this initial foray into the world of predatory publishing, Eckert and Munchhausen partnered with Sumner to dig deeper into WASET. By analyzing 83 domain names affiliated with WASET and its conferences, Eckert and her colleagues discovered that the predatory journal network was a family con run by Cemal Ardil, his daughter Ebru and son Bora. Based on the WASET website, the Ardils have been running this con since 2007.

According to Eckert and her colleagues, WASET is just a single predatory publishing platform,but it hosts over 5,000 events around the world annually and publishes hundreds of papers in its online “journals.” WASET charges hundreds of dollars to publish in its journals and attend its conferences, which netted the Ardils an estimated $4.1 million in 2017 alone.

Yet WASET doesn’t hold a candle to OMICS Publishing Group, which is likely the largest predatory publisher in the world. In 2016, the Federal Trade Commission filed a suit against OMICS for “deceiving academics and researchers about the nature of its publications and hiding publication fees ranging from hundreds to thousands of dollars.” Last November, the FTC granted a preliminary injunction against OMICS that prohibits the company from “falsely representing that their journals engage in peer review, that their journals are included in any academic journal indexing service, or any measurement of the extent to which their journals are cited.”

By scraping the OMICS and WASET websites, Eckert and her colleagues discovered tens of thousand of abstracts for fake scientific papers. India accounted for nearly 15,000 of these abstracts alone, but researchers from the United States accounted for the second highest submission rate—approximately 10,000 American papers were submitted to OMICS journals and another 3,000 to WASET journals.

So who are the people submitting to these conferences? According to Eckert, these range from academics trying to boost their publishing profile to scientists affiliated with companies who want to boost their scientific cred by having some publications under their belt. A distressing number of these academics come from elite American universities, as well. Eckert and her colleagues discovered 162 papers submitted to WASET and OMICS journals from Stanford, 153 papers from Yale, 96 from Columbia, and 94 from Harvard in the last decade. Yet according to Krause, “this goes way beyond academia.”

“It’s one thing for professors to try to polish their publication list and get more money or reputation, but it can be used for many other purposes,” Krause said last weekend during a talk at Def Con. “We as a society have this feeling that if something is scientifically proven and published, it has value. Usually science does just that, but in the case of the predatory journals it is quite different.”

The danger of these journals is that they can be used by companies to provide scientific justification for unproven treatments. One notable example of this is the case of the company First Immune, which had published dozens of “scientific” papers in these predatory journals lauding the effectiveness of an unproven cancer treatment called GcMAF. GcMAF is a protein that was marketed First Immune starting in 2010, but came under investigation shortly thereafter for running an unlicensed medical facility. The CEO of First Immune, David Noakes, will stand trial in the UK later this year for conspiracy to manufacture a medical product without a license.

The problem is that these predatory journals gave First Immune an air of legitimacy for desperate patients with cancer. This predicament is illustrated in the autobiography of a famous German media personality Miriam Pielhau, who died of breast cancer in 2016. In Dr. Hope, Pielhau describes her battle with cancer and how she settled on GcMAF as a last resort and cited medical studies published in predatory journals as the basis of her decision.

The ease with which people can be duped into taking false medical advice was driven home by Eckert and co, who submitted a research paper to the WASET Journal of Integrative Oncology that claimed that bees wax was a more effective cancer treatment than chemotherapy. The paper was accepted and published in the journal with minimal revisions.

As detailed by Eckert and her colleagues, similar tactics are used to publish studies and host conferences funded by major corporations as well, including the tobacco company Philip Morris, the pharmaceutical company AstraZeneca, and the nuclear safety company Framatone. When the predatory journals publish these companies’ research, they can claim it is “peer reviewed” and thereby grant it an air of legitimacy.

Taken together, the predatory publishers investigated by Eckert and her colleagues only represent about 5 percent of the total research published every year. While this doesn’t pose an existential threat to science as a truth-seeking process, it does work to erode public trust in legitimate research.

Eckert, Krause, and Sumner argue that that the rise of predatory journals makes it imperative that the general public, researchers, and academics stay on their guard to combat the proliferation of bogus research. Science, like democratic politics, has been responsible for some of the greatest advances in the wellbeing of humanity, but that doesn’t mean it’s immune to being undermined by a small group of persistent bad faith actors.

Seven years ago, when Heather Hall was informed by her oncologist that her kidney cancer had spread to the liver, she initially assumed she had just months to live. “I’d been on chemotherapy for a while, but they’d done a CT scan and found three new tumours,” she says. “But they then said that, because the tumours were relatively small, they could try to lengthen my prognosis by removing them with ablation.”

Hall underwent a course of microwave ablation, a minimally invasive treatment where surgeons use hollow needles to deliver intense, focused doses of radiation to heat each tumour until it is destroyed. While ablation technologies – they also commonly include radiofrequency ablation and cryoablation, which destroys tumours using intense cold – are not tackling the underlying cause of the disease, their impact can be enormous as they relieve pain and often prolong survival for many years, all at a low cost.

Studies based on data gathered over the past 10 years show an increasing number of cases of terminally ill patients who have lived for well over a decade after being treated with repeated ablations. Hall’s treatment was successful, but two years later, another two tumours had appeared in her liver, in different locations. Once again they were removed with microwave ablation. Over the past seven years, she has had four separate treatments. “There’s some pain in the immediate aftermath and I’ve felt quite ill for a week afterwards,” she says. “But it seems to have slowed down the progression of the disease, and I still have full function of my liver. With surgery, they would have had to cut a section of it away.”

While there have been many breakthroughs in cancer treatment heralded by the media in recent years – most notably the advances in immunotherapy and combination therapies – the considerable advances in ablation technology and resulting impact on patient survival, have consistently slipped beneath the radar. Not so long ago, the only option for patients such as Hall would have been full or partial removal of an organ, greatly reducing quality of life. But now, with increasingly powerful and efficient devices, surgeons are able to destroy drug-resistant tumours in a growing number of diseases ranging from sarcomas to prostate cancer.

“When we were first using ablation we could only treat the simplest tumours – for example, the ones in the middle of the liver, away from the blood vessels, because the devices were less powerful and predictable,” says Matthew Callstrom, a professor of radiology at the Mayo Clinic, Minnesota. “But now, for example, with microwave ablation – which works by radiating an energy field out of the tip of the needle into the tumour, heating the water within the cancer cells until they are destroyed – you can tune the shape and diameter of that field to prescribe exactly how deep it goes into the tissue. This means we can safely go after more and more complex tumours.”

Major studies published in the past couple of years have confirmed the survival benefits. Last year, the results of the Clocc trial – a five-year study of 119 patients across 22 centres in Europe – showed that patients with colorectal cancer that had metastasised to the liver and who received ablation in addition to drug treatment lived significantly longer on average than those who received drugs alone.

“We work closely with oncologists to determine who is most likely to benefit from this and who isn’t,” says Andreas Adam, professor of interventional radiology at King’s College London. “But it can have huge benefits. For example, I had a patient with breast cancer that had spread to the liver. I ablated the tumours, destroyed them completely and every few months or years, another tumour would develop and I’d ablate again. She went on to live for almost 10 years.”

With ablation treatment allowing many patients to live for far longer, it has the potential to change the perspective on some diagnoses. Patients with metastatic disease who go on to live for another decade or more in relatively little discomfort, often come to view their condition as more like a chronic illness. “It’s a strange feeling because you are still living with an illness which is likely to be terminal sooner rather than later,” Hall says. “But it’s no longer in the forefront of your mind. I’ve even been able to return to work part-time.”

However, not every patient with metastatic disease is a suitable candidate for ablation. Surgeons typically only use the technique on patients with 10 tumours or fewer. Any more, and the only viable options are treatments such as chemotherapy or immunotherapy. “You wouldn’t dream of ablating 50 tumours, because if someone has 50 visible tumours, it’s likely that they have another 100 developing that are not yet visible, and so they need drug treatment to treat the disseminated disease,” Adam says.

But in the coming years, ablation is likely to become available to more and more patients, allowing surgeons to tackle cancers in ever more complex locations.

Among the most promising methods is a technology called irreversible electroporation, which involves electrodes being inserted through the skin into a tumour, allowing a high voltage to be generated across the cancer cell membranes, causing them to self-destruct. This is only offered by a small handful of specialised centres in the world, but is expected to become more widespread over the next decade. “It’s a non-thermal approach, so you can go into more sensitive areas such as the pancreas, or ablate tumours which are in the centre of the liver,” Callstrom says.

One day, surgeons may even be able to ablate the most difficult cancers of all – deep brain tumours. The Israeli company Insightec is developing a device that can use focused ultrasound to destroy brain lesions. Because these tiny pulses of energy can be detected on MRI scanners, surgeons can calibrate them to the exact millimetre. “Each pulse generates a single ablation the size of a grain of rice,” Callstrom says. “Because it’s so tiny this allows you to basically tattoo the tumour and so avoid the boundary to any blood vessels or neurons.”

So for the many patients who have cancer that doesn’t respond to any form of drug treatment, there is now often a way of managing and prolonging their lives, which wasn’t possible before.

“The results of these studies have completely changed the thinking regarding some cancers,” Callstrom says. “With patients with metastatic sarcomas, for instance, people used to think that if the drugs failed, that was that. But now we can monitor them. And every time new tumours pop up, we ablate them.”

Humanpapilloma virus (HPV) is now the leading cause of certain types of throat cancer. Dr. Michael Moore, director of head and neck surgery at UC Davis and an HPV-related cancer expert, answers some tough questions about the trend and what can be done about it.

Q: What is HPV and how is it related to head and neck cancers?

A: There are about 150 different types of HPV, but HPV 16 is the one that most frequently causes cancers that affect the tissue in the oropharynx, which includes back of the throat, soft palate, tonsils and the back or base of the tongue. You can get non-cancerous lesions from other types of HPV that look like warts in the nose, mouth or throat, called papillomas. Some can develop in childhood just from exposure early in life. Some develop later in life and only occasionally turn into cancer.

Q: How do you get HPV?

A: HPV can spread from mother to her baby around the time of delivery. It also spreads through unprotected vaginal, anal or oral sex, and even open-mouth kissing. Some people have been found to be infected without an obvious cause.

Q: How does HPV cause cancer?

A: Most people who are infected clear the virus on their own. In a small group of people it hangs around and causes a persistent infection. Around 1% of US adults have a persistent HPV 16 infection, and in a small subset of these individuals the DNA of the virus incorporates itself into the DNA of the person infected and can start to make proteins that then predispose that person to developing cancer.

Q: How prevalent are HPV-related throat cancers?

A: Traditionally, the risk factors for head and neck cancers were tobacco and alcohol use, but over the last 20 or 30 years we found the rates of those cancers going down because smoking rates have gone down. Meanwhile, the incidence of head and neck cancers related to HPV has gone up more than 200 percent over this time period. This increase has been so dramatic that HPV-related throat cancer has recently surpassed cervical cancer as the most common HPV-related cancer in the United States.

Q: Why are the rates going up?

A: Unlike with cervical cancer, in which the PAP smear is highly effective at finding potentially cancerous or pre-cancerous cells, there is no good screening test for these head and neck cancers. Currently, the use of swab tests for HPV is effective in finding out if you have an HPV infection, but not in determining if the infection will be persistent or if you will ever develop cancer. As a result, such tests are not endorsed as a way to screen for these tumors.

Q: Do both men and women get thee cancers?

A: Men are four times more likely to be diagnosed with an HPV-related head and neck cancer. Researchers don’t yet know why. It may have to do with sexual practices or related to the types of exposure they receive. The local or systemic immune system may also play a role.

Q: Can HPV-related head and neck cancers be prevented?

A: We have a very effective vaccine against HPV, and we know the vaccine can prevent oral HPV infections. In fact, studies have shown that the vaccine is 93 percent effective in preventing the oral infections that cause head and neck cancers. We recommend two injections for adolescents under age 15 and three for those over 15. The vaccine is recommended for children age 10-11, but vaccination can start in children as young as age 9, and in boys as late as age 21 and in girls as late as 26. It is also important to maintain safe sexual practices and avoid other potentially cancer-causing exposures such as tobacco, alcohol and marijuana.

Q: What are the main barriers to vaccination?

A: Studies have shown that the biggest reason kids don’t get it is lack of physician endorsement or recommendation. The American Cancer Society is trying to change that, asking physicians to introduce it to parents when they discuss other adolescent vaccines. There has also been concern that parents aren’t comfortable talking about sexuality with their children, and some have worried that if the child gets the vaccine they are more likely to be sexually active. That theory has been debunked in scientific studies.

Q: How safe and effective is the HPV vaccine?

A: It has a very safe track record and is continually undergoing evaluation to look for potential side effects. While there are some risks with any vaccine, one of the most common side effects is that patients may feel light headed after being vaccinated, and it is recommended they are observed for 15 minutes afterward.

Beating cancer is a race against time. Developing radiation therapy plans — individualized maps that help doctors determine where to blast tumours — can take days. Now, Aaron Babier (MIE PhD candidate) has developed automation software that aims to cut the time down to mere hours.

Their software uses artificial intelligence (AI) to mine historical radiation therapy data. This information is then applied to an optimization engine to develop treatment plans. The researchers applied this software tool in their study of 217 patients with throat cancer, who also received treatments developed using conventional methods.

The therapies generated by Babier’s AI achieved comparable results to patients’ conventionally planned treatments. — and it did so within 20 minutes. The researchers recently published their findings in Medical Physics.

“There have been other AI optimization engines that have been developed. The idea behind ours is that it more closely mimics the current clinical best practice,” says Babier.

If AI can relieve clinicians of the optimization challenge of developing treatments, more resources are available to improve patient care and outcomes in other ways. Health-care professionals can divert their energy to increasing patient comfort and easing distress.

“Right now treatment planners have this big time sink. If we can intelligently burn this time sink, they’ll be able to focus on other aspects of treatment. The idea of having automation and streamlining jobs will help make health-care costs more efficient. I think it’ll really help to ensure high-quality care,” says Babier.

Babier and his team believe that with further development and validation, health-care professionals can someday use the tool in the clinic. They maintain, however, that while the AI may give treatment planners a brilliant head start in helping patients, it doesn’t make the trained human mind obsolete. Once the software has created a treatment plan, it would still be reviewed and further customized by a radiation physicist, which could take up to a few hours.

“It is very much like automating the design process of a custom-made suit,” explains Chan. “The tailor must first construct the suit based on the customer’s measurements, then alter the suit here and there to achieve the best fit. Our tool goes through a similar process to construct the most effective radiation plan for each patient.”

Trained doctors, and often specialists, are still necessary to fine-tune treatments at a more granular level and to perform quality checks. These roles still lie firmly outside the domain of machines.

For Babier, his research on cancer treatment isn’t just an optimization challenge.

“When I was 12 years old, my stepmom passed away from a brain tumour,” Babier shares.

“I think it’s something that’s always been at the back of my head. I know what I want to do, and that’s to improve cancer treatment. I have a family connection to it. It adds a human element to the research,” says Babier.

As if you don’t have enough reasons to feel guilty for avoiding the dentist, it turns out a healthy mouth is linked to a lot more. than the absence of cavities and plaque. Researchers say our mouths are home to an ecosystem of billions of bacteria with influence far beyond our teeth and gums—influence they are just starting to unravel.

“We know that oral bacteria affect almost every aspect of our health—metabolism, cardiovascular system, neurological health, and more,” says Yiping Han, a microbiologist at Columbia University Dental and Medical Schools in New York City.

Scientists like Han are grappling with questions that will change our understanding of how the body works. Not only are they studying the ways bacteria in our mouths interact with one another but they’re also investigating why mouth bacteria show up in other parts of the body, such as the lining of the heart, around tumors, and even in the brain.

The idea that our bodies host a world of bacteria may sound familiar. For the past decade, we’ve seen a surge of scientific research on the gut microbiome, which describes the bacteria that live in the gastrointestinal tract. Gut bacteria seem to have a hand in a surprising number of functions, from the predictable (like digestion and nutrient uptake) to the more surprising (obesity and depression). So it makes sense that the next place for a breakthrough would be upstream—the mouth.

Scientists have identified 700-plus strains of bacteria swiped from cheeks around the world, which makes the mouth the second-largest microbiome in the body (just behind the GI tract). And they’re trying to figure out the roles of these strains. Sussing out what combination of bacteria makes a person healthy or sick would be a major step in staving off diseases.

For instance, certain bacteria are the culprits behind a bunch of maladies that send you to the dentist, like plaque, gum disease, and bad breath. Those kinds of discoveries get dentists excited. That said, what’s really interesting is that oral bacteria pop up all over the body and are linked to a host of other medical issues.

This newfound knowledge is made possible by advancements in DNA and RNA decoding, and microscopic imaging. Scientists upload new information to oral microbiome repositories at the Forsyth Institute in Cambridge, Massachusetts; Ohio State University; and Los Alamos National Laboratory in New Mexico.

This knowledge sharing has helped to unravel some long-standing medical mysteries. For instance, doctors have, for decades, puzzled over why people with cardiovascular issues, like endocarditis (an infection of the lining of the heart) or clogged arteries, also have gum disease. Turns out that the inflamed gums allow oral bacteria to get into the bloodstream, where they can wreak havoc on the heart and vessels.

That’s not the only way that bacteria in the mouth end up elsewhere. Swallowing a teaspoon of saliva disperses 5 million bacteria into your digestive tract, says Colleen Cavanaugh, a biology researcher at Harvard University. (Preliminary findings suggest that oral sex can be a conduit, too, Han says.)

“It’s a mobile microbiome,” Han says. “There are some bacteria that, when they’re in the mouth, they’re mostly harmless, but when they go to other sites in the body, they become pathogens,” Han says.

Take Fusobacterium nucleatum, or Fn for short. In your mouth, it causes dental plaque. But it’s a menace if it encounters a colon cancer tumor. Han’s lab has found that Fn acts as an accelerant, prompting a tumor to grow faster, protecting it from chemotherapy drugs, and encouraging it to metastasize to the liver (which is particularly dangerous). Fn has also been found in the joint fluid in people with rheumatoid arthritis, an inflammatory disease. And it’s even been detected in brain abscesses, meaning it has the ability to jump the blood-brain barrier, which is quite a feat— very few substances that float in the blood can get to the brain and spinal cord.

Does Fn cause colon cancer? No. But down the road, knowing that a patient’s tumor is being bodyguarded by Fn may change the way he’s cared for.

And new research suggests that the oral bacteria can also have a direct impact on how cancer plays out. A study published in Scientific Reports found that people who are diagnosed with oral or throat cancers—which are notoriously difficult to treat and have high rates of mortality—had similar oral microbiome compositions.

There are a couple of explanations for why people with the same disease would share similar bacteria. It could be that bad habits like drinking, smoking, and poor oral hygiene create the perfect conditions for certain bacteria to grow (and others to die off). Genetics probably play a role, in that a person’s mouth is predisposed to having more of some bacteria, less of others. Most likely, it’s a little bit of both. Regardless, knowing how the microbiome changes composition when it’s sick may help doctors prevent and treat disease.

Scientists are interested not only in the bacteria they find but also in what they don’t. A six-year study from the University of Copenhagen finds that not enough of bacteria called Lactobacillus can be a predictor of weight gain. We’re not at the place that simply peppering a person’s mouth with some Lactobacillus would get people to drop pounds. But that could be where things are headed.

Bacteria also interact with one another. It’s an ecosystem, after all. Decoding these relationships could be the beginning of a new way to treat oral issues, says Ted Jin. He’s the founder of Qii, which makes a canned tea drink designed to encourage balanced mouth bacteria. The beverage is more anti-plaque than anti-cancer, but it’s part of a larger effort by Jin and his team of researchers to understand the intricacies of the mouth biome in order to make better oral-care products down the road.

What experts are learning about the state of our maws isn’t entirely rosy. For one, there’s a hypothesis that the mouths of people in the U.S. aren’t as diverse as they should be. Crappy, overly processed diets with too much sugar and not enough fresh produce are not great for a healthy oral ecosystem. Nor is our fascination with all things antibacterial, which is why experts are beginning to discourage patients from using harsh mouthwashes that kill good and bad bacteria indiscriminately. (The Food and Drug Administration banned certain ingredients in antibacterial hand soap in 2016, in part because they were killing off good bacterial strains and promoting “superbugs.”)

These differences may also help explain why there are areas of the world with less-advanced oral hygiene practices, but where people generally have teeth and gums that are just fine. And in addition to geography and diet, there’s certainly a genetic component to all of this, so if your kid’s got a mouthful of cavities, you’re at least partially to blame.

Another upshot to all of this will come in the form of precision medicine. In the future, you may be able to send off some spit and receive back a mouthwash tailored specifically for your oral microbiome, Jin says. If you have too much of a certain bacteria strain, you could swish with a formula that contains another, which would act like a microscopic smart bomb to get conditions like halitosis (bad breath) or gum disease under control.

You don’t have to wait for the mouthwash of the future to do right by your mouth. For starters, eat a Mediterranean diet, says Jason Tetro, a visiting scientist at the University of Guelph in Ontario and author of The Germ Code. “Staples of the diet, such as fish and vegetables, have omega fatty acids and phytochemicals,” Tetro says. “And in some cases, things like pomegranates have antimicrobials, which seek out and kill bad bacteria and help maintain a less acidic environment.”

His secret weapon against oral inflammation? The sesame paste tahini. It helps promote an alkaline environment in the mouth, Tetro says. So if your maw feels a little sore from fast food or booze, swish with a spoonful of tahini for some low-tech relief.

And low-tech is kind of the point. While researchers like Han are teasing out microscopic secrets, one petri dish at a time, what we’re learning seems to substantiate what we already know. Brushing and flossing is still a great way to keep your oral microbiome healthy. And no more excuses: time to schedule that dentist appointment.

The UK has announced that, after a great deal of pressure, it will be making the HPV vaccine available to teenage boys, potentially protecting them from a number of cancers.

The vaccine is routinely offered to teenage girls in schools. It has shown an impressive safety record while at the same time driving down cervical, oral and throat cancer rates by protecting young women from sexually transmitted HPV.

Campaigners have long said that teenage boys should also be provided the vaccine, because evidence has shown the HPV vaccine can reduce rates of oral, throat, penile and anal cancers. Unfortunately, Public Health England has taken some convincing on this issue, with a cash-strapped National Health Service having to make sure that every investment more than pays its way.

Now, the government says it believes the cost is far outweighed by the public health benefit.

Dr. Mary Ramsay, Head of Immunisations at Public Health England, is quoted as saying, “This extended programme offers us the opportunity to make HPV related diseases a thing of the past and build on the success of the girls’ programme, which has already reduced the prevalence of HPV 16 and 18, the main cancer-causing types, by over 80 percent.”

This change of course comes after the Joint Committee on Vaccination and Immunisation said earlier this month that, after careful review, it believed the HPV vaccination program should be extended to boys, as it found “gender-neutral vaccination is highly likely to be cost effective”.

HPV VACCINE’S SAFETY RECORD IS OVERWHELMING
While there have been some scare stories in the media relating to supposed side-effects from HPV vaccine, it’s important to note that the actual safety record for HPV vaccination is overwhelmingly good.

In fact, a meta-analysis of studies involving over 70,000 women demonstrated that of the 14 deaths per 10,000 that occurred around the time of vaccination, not a single one could be directly linked to the vaccine.

Like every live vaccine, there is the potential for some side effects. HPV vaccine’s side-effects are, for the most part, mild. If a person does have an adverse reaction, it is likely to manifest in localized swelling, a rash, or feelings of fatigue or nausea — all of which will subside on their own within a day or two.

Again, like any medication, there is the potential for more serious side-effects. However, for the HPV vaccine the chances of this happening are incredibly low. The NHS puts it at less than one out of every million cases for reactions like anaphylaxis.

Ah, but aren’t there studies linking HPV to various conditions like fibromyalgia? There have been such small-scale studies. None have found a convincing link, and their size and quality pale in comparison to the data we have to support that, for most women, the vaccine is safe and effective.

It may well be that for a tiny minority of people, the vaccine could present a risk, but that possibility is neither confirmed nor does it outweigh the manifest benefit. The HPV vaccine is thought to save thousands of lives per year globally by preventing cervical cancer deaths.

In short, the weight of not just national but global evidence points to the HPV vaccine saving lives and doing so safely.

WHY THIS MOVE WILL PROTECT GIRLS AS WELL AS BOYS
The fact that the vaccine will protect boys from cancer is, for many, motivation enough to say that the vaccine should be provided to teenage boys.

However, in addition to that, protecting boys from HPV has a knock-on effect for girls. That’s because it cuts down the circulating HPV strains that cause cancer for young women. This means that those young woman who cannot have the vaccine due to their medical history or current conditions will benefit from herd immunity.

It’s estimated that HPV16 and HPV18 circulation has already gone down by 80 percent in the UK as a result of the vaccination program.

In this way, not only are we seeking to eradicate the incredibly common HPV strains, we are also helping to cut our children’s cancer risk. The UK is among the first group of nations to offer the HPV vaccine to both girls and boys, and it is hoped that other nations will follow.

Not just cigarette smokers, those smoking e-cigarettes as well as consuming smokeless tobacco like chewing tobacco and more are at greater risk of developing oral cancer, shows a recent study conducted by University of California.

In case you think only cigarette smokers are at a higher risk of getting oral cancer, you are widely mistaken. A recent study has found that a wide majority of non-cigarette tobacco users as well those using electronic cigarettes are exposed to considerable level of carcinogen, as much as a cigarette user is exposed to. Not just that, shockingly smokeless tobacco users were found at a greater exposure to tobacco-specific nitrosamines (TSNA). The study has been conducted by the scholars from University of California, San Francisco.

What is Oral cancer?
Belonging to the head and neck cancer group, oral cancer is a type of cancer that grows in mouth or throat tissues and mostly hit the squamous cells of your mouth, tongue and lips. Oral cancer can of several types – lip cancer, tongue cancer, cancer in the inner lining of your cheek, gums, floor of the mouth and hard and soft palate. It is important to go to a dentist for a biannual check-up for early detection of oral cancer, experts say. Due to lack of awareness and adequate check-ups, oral cancer gets detected only after they spread to the lymph nodes of the neck.

The other risk factors
Apart from tobacco consumption, both smoke and smokeless and excessive alcohol consumption, there are several other risk factors that can put you to greater risk of developing oral cancer. Human papillomavirus (HPV) infection, chronic facial exposure to sun, a former diagnosis of oral cancer, a family history of oral or any other types of cancer, a depleted body immune system, inadequate nutrition, genetic syndromes are other risk factors for oral cancer. Shockingly, being male is another potent risk factor as studies have found males to be at a higher risk of developing oral cancer, twice as likely compared to women.

“I had got a lump in my neck. I had the tonsils out, and within the next few days, I was having radical neck dissection,” he said. “Then I had six weeks of intensive, targeted radiotherapy. The burning effect towards the end of the treatment became very painful.”

The therapy involved a radiotherapy mask, molded to the shape of his face, that went over his head as radiotherapy was beamed in, targeting the cancer.

The discovery of his cancer not only startled him, it startled everyone who knew him.
Phil is my dad, and to our family, he had always been healthy: He doesn’t smoke, he rarely drinks alcohol, and he generally stays fairly fit.

But that’s not how cancer works.

At the time of the diagnosis, Phil didn’t question how or what could have caused his cancer, as he focused on getting better.

Like many men in the UK and around the world, he wasn’t aware of a group of viruses that were a threat, human papillomavirus or HPV, which were eventually connected to his cancer.

“To discover it was linked to HPV was a massive shock,” he said. “There was a lot of speculation over what could have caused it. To discover it was that, was certainly a surprise. I didn’t really know it was a threat to me.”

A cancerous virus

HPV is a group of 150 related viruses that can be transmitted through any form of sexual contact, whether kissing or intercourse. In most cases, the human body will get rid of it naturally, but certain high-risk types can develop into things like genital warts and cancers, including cervical, anal and throat.

But there is a vaccine, and how it works is pretty simple. It’s a mimic of the virus particle; when administered into someone’s muscle, it creates many more antibodies than a natural infection would, according to John Doorbar, professor of viral pathogenesis at Cambridge University.

According to the US Centers for Disease Control and Prevention, “almost every person who is sexually active will get HPV at some time in their life if they don’t get the HPV vaccine.”

The vaccine needs to be given before a person is exposed to HPV. Its effectiveness in terms of preventing infections is well-known — 100% in some studies — but who gets it is a question of debate around the globe, particularly in the UK.

In the UK, girls ages 12 to 13 are routinely offered the first HPV vaccination. They can get the vaccine for free via the National Health Service from ages 12 to 18. This is encouraged to help combat cervical cancer, which a recent report suggests it has done globally.

In England, between 2010 and 2016, infections with HPV 16 and 18 (two types of the virus responsible for most cervical cancer cases) fell 86% among women 16 to 21 who were eligible for the vaccine during this period, Public Health England found.

But what about men?

Until now, some experts in the UK have argued that men would ultimately be protected against the virus through “herd immunity”: As long as girls are well-protected, the male population should be shielded, too.

But according to the Royal Society of Public Health, which supports providing the vaccine to boys, uptake of the vaccine for girls is insufficiently high to ensure herd immunity in several areas of the UK. Men are still at risk of acquiring HPV from sexual contact with women from countries without a vaccination program, the society said.

In April, NHS England and Public Health England, on recommendation from the UK’s Joint Committee on Vaccination and Immunisation, decided to introduce the vaccine to men 45 or younger who have sex with other men, often called MSM, after concluding that this group does not benefit from herd immunity.

Historically, heterosexual men and young boys have not been offered it through the NHS but can pay to receive it privately. Pharmacies including Boots, Lloyds and Superdrug in the UK charge about 150 pounds ($196) per dose, with people typically needing two or three doses.

But on July 18, the vaccination committee recommended extending the HPV immunization program to boys after it reviewed the evidence for vaccinating boys since 2013. A recommendation last year concluded it was still not cost-effective to vaccinate this group, but experts and campaigners appealed for the committee to look again — and their stance changed.

“It is clear that a programme to vaccinate adolescent males would provide those vaccinated with direct protection against HPV infection, and associated disease including anogenital warts, anal, penile and oropharyngeal cancers,” the statement says. The committee confirmed that evidence has strengthened on the association of HPV with non-cervical cancers, which affect men as well as women, and that vaccination is efficacious in preventing these other HPV-related cancers.

In response to the recommendation, the same day, the Scottish government announced that it would implement a vaccination program to boys as soon as it practically could, Public Health Minister Joe FitzPatrick said. Wales also opted to roll out the vaccine to boys.

The question remaining is whether England will follow suit.

There is some disparity over the number of other countries vaccinating boys against HPV. Shirley Cramer, chief executive of the Royal Society of Public Health, said 20 countries vaccinate boys, while the HPV Action partnership says that about 15 roll it out to boys as well as girls.

The vaccine has been approved for males in the United States for almost 10 years. Italy and Australia are also pioneering gender-neutral vaccination plans.

Lagging behind and increasing rates

In 2017, after being in remission for three years, Phil’s cancer surfaced again — this time, in the brain and the lungs.

“I started to feel some funny fluttery feelings in my chest,” he said. “It was only my oncologist, who revealed to me that I had six small lesions on my lungs. An MRI scan also showed three on my brain.

“That’s the nature of cancer. It’s a crafty disease,” he said.

A 2017 study found that one in nine American men is infected with the oral form of HPV. Nationwide, rates for oral HPV infections are 11.5% of men and 3.2% of women: 11 million men, compared with 3.2 million women, the researchers estimated.

Among HPV-related cancers, a type of head and neck cancer called oropharyngeal squamous cell carcinoma was far more likely to strike men in the US, the same study found, with its incidence surpassing cervical cancer among women. Men who have had multiple sex partners, men who reported having sex with men and men with genital HPV infections were found to have the highest rates of oral HPV.

But in the UK, the discussion around vaccinating boys has been ongoing. In less than 10 years, admissions for primary cancerous tumors of the head and neck increased by almost 10,000, according to the NHS, from 29,198 in 2008-09 to 37,417 in 2016-17.

A recent review by the nonprofit medical research group Cochrane acknowledged that HPV was not only linked to cervical cancers, it increases risk of vulval cancers, penile cancers and some head and neck cancers. But the review also said that these cancers were rarer and that ascertaining the effects of vaccination on them may require the evaluation of non-randomized, population-level evidence over many years.

Beyond the price tag

“The problem is cost-effectiveness, and that is why the government hadn’t made a decision to vaccinate boys in this country,” said Jo Morrison, co-ordinating editor for the Cochrane Gynae, Neuro and Orphan Cancer Group.

However, she added, “doctors and other informed people are looking to get their boys vaccinated.”

Giampiero Favato is one of them. “Twenty years from now, we will laugh about this discussion,” said the health economics specialist at Kingston University. “It is obvious we should vaccinate boys. HPV is a gender-neutral killer. When my son is 12, I will pay for the vaccination if necessary.”

He is skeptical of “herd immunity” and giving the vaccine only to girls: “The current models are not capable of replicating the sexual behavior and preference in the normal population. Most of the models are based on the assumption that sex is only happening between fully heterosexual couples and their partnerships.”

This of course would mean more money for the NHS, but Favato says “price is not the issue,” and the private cost of the vaccine is unlikely be anywhere near that for the NHS, which is likely to get it at a competitive rate. “In Italy, the vaccination costs about $30 to $32 per vial.”

But Helen Bedford, professor of children’s health at the UCL Great Ormond Street Institute of Child Health, added that cost-effectiveness still needs to be taken into account and that the method of calculating this is what ultimately needs to change.

“In view of the long interval between infection with HPV and development of disease, [the Joint Committee on Vaccination and Immunisation] are supportive of changing the methods for calculating cost effectiveness to consider HPV vaccine for boys,” she said. “A review of cost-effectiveness modeling is soon to be concluded, and this is one of the issues that is being considered as part of that review.”

Phil said that if he could have had the vaccine readily available when he was younger, he would have taken it.

He continues to fight his cancer today, but cases like his are increasing amid the discourse on HPV vaccination rollouts in the UK.

“I would urge all boys to be vaccinated as a matter of course,” he said. “We have long vaccinated against the likes of polio, measles, mumps and rubella. HPV is just as serious and life-threatening as any of these.”

Note from OCF: We are one of the first supporters and donors to the HPV Action Partnership that originally supported research and early perception of the concept of boys being vaccinated for herd immunization. This has been a long term endeavor and a labor of love. Men get oral cancers more than woman do and we want to inform that the HPV Vaccine goes beyond protecting from cervical cancers; it also protects from anal, penile and oropharyngeal cancer.

A review that covered nearly 20 million people has confirmed that people with diabetes face a higher risk of cancer, and that risk is higher among women than men.

Findings published in Diabetologia, the journal of the European Association for the Study of Diabetes, showed that women with type 1 of type 2 diabetes were particularly at risk for cancers of the stomach, mouth, and kidney.

The authors reviewed articles appearing in PubMed through December 2016, and ended up including data from 106 articles in the study. This allowed the review to evaluate gender-specific effects of diabetes on overall cancer risk as well as 50 site-specific cancers.

Results covered data from 47 countries. Authors called it “the most comprehensive analysis to date on the sex-specific effects of diabetes on cancer risk.”

Overall, the review showed diabetes is a risk factor for most cancers, and that women with diabetes were 6% more likely than men with the disease to develop some form of cancer. Among people with diabetes, researchers also found:

Women were 27% more likely to develop cancer than those without diabetes. Men faced a 19% higher risk of cancer.

Of note, women faced an 11% higher risk of kidney cancer, a 13% higher risk of oral cancer, a 14% higher risk of stomach cancer, and a 15% higher risk of leukemia than men.

Liver cancer was an exception: the risk for women with diabetes was 12% lower than that of men.

Sanne Peters, PhD, of The George Institute for Global Health at the University of Oxford and a study coauthor, said that women may be more likely to develop cancer than men with diabetes because they are in prediabetes longer than men; typically, women develop impaired glucose tolerance that goes unaddressed for up to 2 years longer than men.

“Historically, we know that women are often untreated when they first present with symptoms of diabetes, are less likely to receive intensive care and are not taking the same levels of medications as men,” Peters said in a statement. “All of these could go some way into explaining why women are at greater risk of developing cancer. But without research we can be certain.”

Peters and lead author Toshiaki Ohkuma, a research fellow at the Global Institute, said the results show why gender-specific research is important. While the link between diabetes and cancer has been known for some time, Ohkuma said, “We have also demonstrated for the first time that women are more likely to develop any form of cancer, and have a significantly higher chance of developing kidney, oral, and stomach cancers, and leukemia.”

Elevated blood glucose seen in diabetes is believed to damage DNA, causing cancer. However, the authors wrote, “Further studies are needed to clarify the mechanisms underlying the sex differences in the diabetes–cancer association.”

More than 30 million people in the United States have diabetes, with 95% of the cases being type 2 diabetes. Worldwide, more than 415 million people have the disease.

Reference
Ohkuma T, Peters SAE, Woodward M. Sex differences in the association between diabetes and cancer: a systematic review and meta-analysis of 121 cohorts including 20 million individuals and one million events. Diabetologia, 2018. doi: 10.1007/s00125-018-4664-5.

To an outsider, the fancy booths at a June health insurance industry gathering in San Diego, Calif., aren’t very compelling: a handful of companies pitching “lifestyle” data and salespeople touting jargony phrases like “social determinants of health.”

But dig deeper and the implications of what they’re selling might give many patients pause: a future in which everything you do — the things you buy, the food you eat, the time you spend watching TV — may help determine how much you pay for health insurance.

With little public scrutiny, the health insurance industry has joined forces with data brokers to vacuum up personal details about hundreds of millions of Americans, including, odds are, many readers of this story.

The companies are tracking your race, education level, TV habits, marital status, net worth. They’re collecting what you post on social media, whether you’re behind on your bills, what you order online. Then they feed this information into complicated computer algorithms that spit out predictions about how much your health care could cost them.

Are you a woman who recently changed your name? You could be newly married and have a pricey pregnancy pending. Or maybe you’re stressed and anxious from a recent divorce. That, too, the computer models predict, may run up your medical bills.

Are you a woman who has purchased plus-size clothing? You’re considered at risk of depression. Mental health care can be expensive.

Low-income and a minority? That means, the data brokers say, you are more likely to live in a dilapidated and dangerous neighborhood, increasing your health risks.

“We sit on oceans of data,” said Eric McCulley, director of strategic solutions for LexisNexis Risk Solutions, during a conversation at the data firm’s booth. And he isn’t apologetic about using it. “The fact is, our data is in the public domain,” he said. “We didn’t put it out there.”

Insurers contend that they use the information to spot health issues in their clients — and flag them so they get services they need. And companies like LexisNexis say the data shouldn’t be used to set prices. But as a research scientist from one company told me: “I can’t say it hasn’t happened.”

At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry’s data gathering runs counter to its touted, and federally required, allegiance to patients’ medical privacy. The Health Insurance Portability and Accountability Act, or HIPAA, only protects medical information.

“We have a health privacy machine that’s in crisis,” said Frank Pasquale, a professor at the University of Maryland Carey School of Law who specializes in issues related to machine learning and algorithms. “We have a law that only covers one source of health information. They are rapidly developing another source.”

Patient advocates warn that using unverified, error-prone “lifestyle” data to make medical assumptions could lead insurers to improperly price plans — for instance, raising rates based on false information — or discriminate against anyone tagged as high cost. And, they say, the use of the data raises thorny questions that should be debated publicly, such as: Should a person’s rates be raised because algorithms say they are more likely to run up medical bills? Such questions would be moot in Europe, where a strict law took effect in May that bans trading in personal data.

This year, ProPublica and NPR are investigating the various tactics the health insurance industry uses to maximize its profits. Understanding these strategies is important because patients — through taxes, cash payments and insurance premiums — are the ones funding the entire health care system. Yet the industry’s bewildering web of strategies and inside deals often has little to do with patients’ needs. As the series’ first story showed, contrary to popular belief, lower bills aren’t health insurers’ top priority.

Inside the San Diego Convention Center, there were few qualms about the way insurance companies were mining Americans’ lives for information — or what they planned to do with the data.

Linking health costs to personal data

The sprawling convention center was a balmy draw for one of America’s Health Insurance Plans’ marquee gatherings. Insurance executives and managers wandered through the exhibit hall, sampling chocolate-covered strawberries, champagne and other delectables designed to encourage deal-making.

Up front, the prime real estate belonged to the big guns in health data: The booths of Optum, IBM Watson Health and LexisNexis stretched toward the ceiling, with flat screen monitors and some comfy seating. (NPR collaborates with IBM Watson Health on national polls about consumer health topics.)

To understand the scope of what they were offering, consider Optum. The company, owned by the massive UnitedHealth Group, has collected the medical diagnoses, tests, prescriptions, costs and socioeconomic data of 150 million Americans going back to 1993, according to its marketing materials.(UnitedHealth Group provides financial support to NPR.)

The company says it uses the information to link patients’ medical outcomes and costs to details like their level of education, net worth, family structure and race. An Optum spokesman said the socioeconomic data is de-identified and is not used for pricing health plans.

Optum’s marketing materials also boast that it now has access to even more. In 2016, the company filed a patent application to gather what people share on platforms like Facebook and Twitter, and to link this material to the person’s clinical and payment information. A company spokesman said in an email that the patent application never went anywhere. But the company’s current marketing materials say it combines claims and clinical information with social media interactions.

I had a lot of questions about this and first reached out to Optum in May, but the company didn’t connect me with any of its experts as promised. At the conference, Optum salespeople said they weren’t allowed to talk to me about how the company uses this information.

It isn’t hard to understand the appeal of all this data to insurers. Merging information from data brokers with people’s clinical and payment records is a no-brainer if you overlook potential patient concerns. Electronic medical records now make it easy for insurers to analyze massive amounts of information and combine it with the personal details scooped up by data brokers.

It also makes sense given the shifts in how providers are getting paid. Doctors and hospitals have typically been paid based on the quantity of care they provide. But the industry is moving toward paying them in lump sums for caring for a patient, or for an event, like a knee surgery. In those cases, the medical providers can profit more when patients stay healthy. More money at stake means more interest in the social factors that might affect a patient’s health.

Some insurance companies are already using socioeconomic data to help patients get appropriate care, such as programs to help patients with chronic diseases stay healthy. Studies show social and economic aspects of people’s lives play an important role in their health. Knowing these personal details can help them identify those who may need help paying for medication or help getting to the doctor.

But patient advocates are skeptical that health insurers have altruistic designs on people’s personal information.

The industry has a history of boosting profits by signing up healthy people and finding ways to avoid sick people — called “cherry-picking” and “lemon-dropping,” experts say.

Among the classic examples: A company was accused of putting its enrollment office on the third floor of a building without an elevator, so only healthy patients could make the trek to sign up. Another tried to appeal to spry seniors by holding square dances.

The Affordable Care Act prohibits insurers from denying people coverage based on pre-existing health conditions or charging sick people more for individual or small group plans. But experts said patients’ personal information could still be used for marketing, and to assess risks and determine the prices of certain plans. And the Trump administration is promoting short-term health plans, which do allow insurers to deny coverage to sick patients.

Robert Greenwald, faculty director of Harvard Law School’s Center for Health Law and Policy Innovation, said insurance companies still cherry-pick, but now they’re subtler. The center analyzes health insurance plans to see if they discriminate. He said insurers will do things like failing to include enough information about which drugs a plan covers — which pushes sick people who need specific medications elsewhere. Or they may change the things a plan covers, or how much a patient has to pay for a type of care, after a patient has enrolled. Or, Greenwald added, they might exclude or limit certain types of providers from their networks – like those who have skill caring for patients with HIV or hepatitis C.

If there were concerns that personal data might be used to cherry-pick or lemon-drop, they weren’t raised at the conference.

At the IBM Watson Health booth, Kevin Ruane, a senior consulting scientist, told me that the company surveys 80,000 Americans a year to assess lifestyle, attitudes and behaviors that could relate to health care. Participants are asked whether they trust their doctor, have financial problems, go online, or own a Fitbit and similar questions. The responses of hundreds of adjacent households are analyzed together to identify social and economic factors for an area.

Ruane said he has used IBM Watson Health’s socioeconomic analysis to help insurance companies assess a potential market. The ACA increased the value of such assessments, experts say, because companies often don’t know the medical history of people seeking coverage. A region with too many sick people, or with patients who don’t take care of themselves, might not be worth the risk.

Ruane acknowledged that the information his company gathers may not be accurate for every person. “We talk to our clients and tell them to be careful about this,” he said. “Use it as a data insight. But it’s not necessarily a fact.”

In a separate conversation, a salesman from a different company joked about the potential for error. “God forbid you live on the wrong street these days,” he said. “You’re going to get lumped in with a lot of bad things.”

The LexisNexis booth was emblazoned with the slogan “Data. Insight. Action.” The company said it uses 442 nonmedical personal attributes to predict a person’s medical costs. Its cache includes more than 78 billion records from more than 10,000 public and proprietary sources, including people’s cellphone numbers, criminal records, bankruptcies, property records, neighborhood safety and more. The information is used to predict patients’ health risks and costs in eight areas, including how often they are likely to visit emergency rooms, their total cost, their pharmacy costs, their motivation to stay healthy and their stress levels.

People who downsize their homes tend to have higher health care costs, the company says. As do those whose parents didn’t finish high school. Patients who own more valuable homes are less likely to land back in the hospital within 30 days of their discharge. The company says it has validated its scores against insurance claims and clinical data. But it won’t share its methods and hasn’t published the work in peer-reviewed journals.

McCulley, LexisNexis’s director of strategic solutions, said predictions made by the algorithms about patients are based on the combination of the personal attributes. He gave a hypothetical example: A high school dropout who had a recent income loss and doesn’t have a relative nearby might have higher than expected health costs.

But couldn’t that same type of person be healthy? I asked.

“Sure,” McCulley said, with no apparent dismay at the possibility that the predictions could be wrong.

McCulley and others at LexisNexis insist the scores are only used to help patients get the care they need and not to determine how much someone would pay for their health insurance. The company cited three different federal laws that restricted them and their clients from using the scores in that way. But privacy experts said none of the laws cited by the company bar the practice. The company backed off the assertions when I pointed that the laws did not seem to apply.

LexisNexis officials also said the company’s contracts expressly prohibit using the analysis to help price insurance plans. They would not provide a contract. But I knew that in at least one instance a company was already testing whether the scores could be used as a pricing tool.

Before the conference, I’d seen a press release announcing that the largest health actuarial firm in the world, Milliman, was now using the LexisNexis scores.

I tracked down Marcos Dachary, who works in business development for Milliman. Actuaries calculate health care risks and help set the price of premiums for insurers. I asked Dachary if Milliman was using the LexisNexis scores to price health plans and he said: “There could be an opportunity.”

The scores could allow an insurance company to assess the risks posed by individual patients and make adjustments to protect themselves from losses, he said. For example, he said, the company could raise premiums, or revise contracts with providers.

It’s too early to tell whether the LexisNexis scores will actually be useful for pricing, he said. But he was excited about the possibilities. “One thing about social determinants data – it piques your mind,” he said.

Dachary acknowledged the scores could also be used to discriminate. Others, he said, have raised that concern. As much as there could be positive potential, he said, “there could also be negative potential.”

Erroneous inferences from group data

It’s that negative potential that still bothers data analyst Erin Kaufman, who left the health insurance industry in January. The 35-year-old from Atlanta had earned her doctorate in public health because she wanted to help people, but one day at Aetna, her boss told her to work with a new data set.

To her surprise, the company had obtained personal information from a data broker on millions of Americans. The data contained each person’s habits and hobbies, like whether they owned a gun, and if so, what type, she said. It included whether they had magazine subscriptions, liked to ride bikes or run marathons. It had hundreds of personal details about each person.

The Aetna data team merged the data with the information it had on patients it insured. The goal was to see how people’s personal interests and hobbies might relate to their health care costs.

But Kaufman said it felt wrong: The information about the people who knitted or crocheted made her think of her grandmother. And the details about individuals who liked camping made her think of herself. What business did the insurance company have looking at this information? “It was a data set that really dug into our clients’ lives,” she said. “No one gave anyone permission to do this.”

In a statement, Aetna said it uses consumer marketing information to supplement its claims and clinical information. The combined data helps predict the risk of repeat emergency room visits or hospital admissions. The information is used to reach out to members and help them and plays no role in pricing plans or underwriting, the statement said.

Kaufman said she had concerns about the accuracy of drawing inferences about an individual’s health from an analysis of a group of people with similar traits. Health scores generated from arrest records, home ownership and similar material may be wrong, she said.

Pam Dixon, executive director of the World Privacy Forum, a nonprofit that advocates for privacy in the digital age, shares Kaufman’s concerns. She points to a study by the analytics company SAS, which worked in 2012 with an unnamed major health insurance company to predict a person’s health care costs using 1,500 data elements, including the investments and types of cars people owned.

The SAS study said higher health care costs could be predicted by looking at things like ethnicity, watching TV and mail-order purchases.

“I find that enormously offensive as a list,” Dixon said. “This is not health data. This is inferred data.”

Data scientist Cathy O’Neil said drawing conclusions about health risks on such data could lead to a bias against some poor people. It would be easy to infer they are prone to costly illnesses based on their backgrounds and living conditions, said O’Neil, author of the book Weapons of Math Destruction, which looked at how algorithms can increase inequality. That could lead to poor people being charged more, making it harder for them to get the care they need, she said. Employers, she said, could even decide not to hire people with data points that could indicate high medical costs in the future.

O’Neil said the companies should also measure how the scores might discriminate against the poor, sick or minorities.

American policymakers could do more to protect people’s information, experts said. In the United States, companies can harvest personal data unless a specific law bans it, although California just passed legislation that could create restrictions, said William McGeveran, a professor at the University of Minnesota Law School. Europe, in contrast, passed a strict law called the General Data Protection Regulation, which went into effect in May.

Pasquale, the University of Maryland law professor, said health scores should be treated like credit scores. Federal law gives people the right to know their credit scores and how they’re calculated. If people are going to be rated by whether they listen to sad songs on Spotify or look up information about AIDS online, they should know, Pasquale said. “The risk of improper use is extremely high,” he said. “And data scores are not properly vetted and validated and available for scrutiny.”

A creepy walk down memory lane

As I reported this story I wondered how the data vendors might be using my personal information to score my potential health costs. So, I filled out a request on the LexisNexis website for the company to send me some of the personal information it has on me. A week later a somewhat creepy, 182-page walk down memory lane arrived in the mail. Federal law only requires the company to provide a subset of the information it collected about me. So that’s all I got.

LexisNexis had captured details about my life going back 25 years, many that I’d forgotten. It had my phone numbers going back decades and my home addresses going back to my childhood in Golden, Colo. Each location had a field to show whether the address was “high risk.” Mine were all blank. The company also collects records of any liens and criminal activity, which, thankfully, I didn’t have.

My report was boring, which isn’t a surprise. I’ve lived a middle-class life and grown up in good neighborhoods. But it made me wonder: What if I had lived in “high-risk” neighborhoods? Could that ever be used by insurers to jack up my rates — or to avoid me altogether?

I wanted to see more. If LexisNexis had health risk scores on me, I wanted to see how they were calculated and, more importantly, whether they were accurate. But the company told me that if it had calculated my scores it would have done so on behalf of their client, my insurance company. So, I couldn’t have them.